TRIPLE POSITIVE GROUP
Comments
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lago - new and intense back pain for tonlee - thoughts to the dark place - scan, now waiting for word on whether it showed anything. This is the abridged version.
cgesq - I had my expander replaced during Herceptin, then had exchange 5 weeks after the last one. I have heard of others who have stretched their 3-week interval by a few days without any issues.
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I had my exchange 5+ months PFC but it would have been 4 if it wasn't for shingles. Still doing Herceptin. Had my nips, more fat transfer and revision to lefty (all one time) about 6 weeks post final Herceptin.
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Hi, ladies. I'm new to this group, but I've just been reading the last week's worth of posts, and I'm already grateful for you. I feel sure I'm going to learn tons from you, and I hope that, once I get more into the swing of things, I'll be able to return the favor.
TonLee, I'm keeping everything crossed for good results for you, but also for some peace during the wait.
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Welcome, Bryona. How are you doing post-op? I see your surgery was fairly recent.
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Lago, I like your seatbelt speech.
Also something my mom said because she has bc years ago and very quickly after diagnosis was rushed in for a radical double mastectomy. I asked her how she dealt with it emotionally. One thing she said was that she would only give herself a limited time to think about it. So on a given day, she would allow herself some amount of time to feel whatever she was feeling, and then would push it out of her mind and get on with whatever she had to do. I've found taht kind of thing helpful from time to time, perhaps it will help someone on this board.
TonLee, thanks for updating us. A third possibility is that it's equivocal in some way and requires more follow up to get an answer ... but it sure would be nice if someone would call you. Bryonna is brand new here, looks like, but I like how she put it, so -- what she said.
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LeeA,I'm doing well; thanks for asking. Some soreness from the portacath, some tightness from the SNB, but nothing awful. Right now, the most bothersome part is that about half of my breast is numb, and yet it somehow also has this odd, annoying feeling, too. I can't quite describe it, but it makes me not want anything to touch it. Unfortunately, that includes clothes... which is awkward.
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lago, in my spaciness the last few days I forgot to say that I really do appreciate the seatbelt analogy. Someone else has described the chemo as PacMen going after the bad stuff. Also, it's great to see you back. I know you've been busy commuting. I used to live in one of the far west suburbs but never had an actual commute - just went into the city now and then on the train.
cypher, I like your mom's approach to only think about it a limited time each day. Thanks for sharing that!
bryona, I, too, have experienced some strange sensations that have, at times, crossed over into the annoying level. One night, both of my arms felt so strange. It reminded me of how my skin feels on the rare occasions when I have a fever - only amplified. I guess our nerves are all getting back in sync again - although with a BMX - there's absolutely no feeling in the front anymore (and there never will be, from what I understand). My husband (who likes to play nurse :-) has been applying an antibiotic to my right side incisions and if I close my eyes I can't even tell he's touching my skin. I guess this is all part of the so-called new normal.
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Bryona, I had numbness too after the lumpectomy, and sort of an interior itching that wasn't helped by rubbing or scratching. It wasn't too long before everything returned to normal - I don't recall exactly how long, but probably a few weeks max.
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One more thing:
"Ligibel also stresses that more than 80 percent of women who develop breast cancer will not experience a recurrence or die of the disease. "A woman diagnosed with breast cancer," she says, "has much better odds that she will never hear from her disease again than women with most other common cancers." source linky
Read the entire article. It does stress keeping your weight under control
Tonlee if you are having pain in both hips that is a good sign. Usually mets isn't bilateral. Also I think your lack of appetite is stress related. If it were mets related I do believe that is a sign of it being in the liver not bone mets but I'm not sure. Hard to believe you would be hit with all these symptoms at once.
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Hi Lago,
Can you please repost that link? It didn't open in google chrome.
Since my Mom and my father's sister both had BC twice, I am one of those people who are convinced that I will be dealing with this disease multiple times.
Thanks,
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happy holidays everyone... i wanted to take this opportunity to thank you for all the support, valuable information and encouragement during this journey. i am so grateful for this board and all the awesome ladies I have met - you guys are the best!
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Not sure why it isn't working but try copying and pasting one of these:
alturl.com/ck2dd
articles.chicagotribune.com/2012-09-26/health/sc-health-0926-bc-cancer-free-20120926_1_breast-cancer-adjuvant-therapy-joseph-sparano
And remember this is just a statistic. Your individual risk could be higher or lower. It's an overall average but still pretty positive.
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Lago, great analogy a seatbelt.
Tonlee, hope you hear from them, though its been my experience that if its bad, they do contact you. But hugs and prayers.
Dragonfly, hope its not anything but a scare.
Bryona. Welcome. Weird sensations after surgery are to be expected.
To all, this is a busy season and as we go on to celebrate with friends and familes, I just want to wish you the happiest holidays you can manage, no guilt if you don't live up to your regular standards, a peaceful time where BC won't intrude, and Much Love.
Merry Chrismahanakwanzyulivus to all! LOL0 -
PatinMN, thanks for the feedback. I had to have facial reconstruction surgery after an accident 3 years ago, and most of the numbness lasted for about 8 months (some of it's still there). It never occured to me that this might resolve so much more quickly. Fingers crossed! The other thing that's weird is that my nipple is erect all the time, but the areola is soft, and both are numb. I wonder how long that will last.
LeeA, how's your portacath healing? I had a lot of pinching pain at the catheter site for the first week or so, but it's starting to settle down.
lago, I appreciate your positive outlook and the seatbelt analogy. The funny thing for me is that I've (oddly, I suppose) been having trouble because of my positive outlook. I feel like I'm less upset about my daignosis than anyone else is. Maybe it's because I've known so many people who have been through this before me, or maybe I'm just a fatalist, so what's the point in getting upset? I'm definitely not looking forward to possible chemo SE, and I'm kind of freaked out about Tamox (I've always had problems with hormonal treatments making me crazy), but most of the time I don't think about it because it hasn't happened yet. So, everyone is really nice to me, and I feel like a phoney because I'm not sick enough to deserve the attention.
And now you all know how weird I am...
Wishing everyone a peaceful holiday season!
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Thanks Moon for your holiday wishes for us all and the reminder/encouragement to just enjoy the holiday and not feel guilty about not doing what we might normally do. We will get through this!
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Was woundering if any of you has had to wait as long as I have been for their exchange surgery...
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Just catching up again on posts. This thread moves so much faster than it used to!
Omaz-thanks for the link you posted a few pages back.
Thank you everyone for the info and encouragement. It has really calmed me down to hear that a lot of people have had the endometrial thickening as a Tamoxifen SE. I finally told DH this weekend what is going on and he looked scared but said "if we got through last year we can deal with anything". So, I have managed to put the fear on the shelf for now and I'm trying to keep busy and not think about it much. Of course, I'm sure that old anxiety will return when they actually do the biopsy and I have to wait for results again.
Tonlee-I'm keeping you in my thoughts. I'm so sorry you have to wait so long for results. I hear you about getting rid of as much estrogen as possible. I've asked numerous times about removing the ovaries but I'm told no every time because of the protective factor for the bones and heart. Also, since I still haven't had a period since chemo they don't seem as concerned in my case.
Wishing the best to everyone during this holiday season!
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Surgery in five days and I feel anxious to get this over with. I am not anxious to start chemo, but reading everyone else's experiences I feel better about it. I have researched the cold caps and waiting for my MO to get back from vacation to ask questions about the freezer and if he has had others that have used them. It will be my husband helping me so I don't know if more help will be needed to get the caps on and tight?
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sherry - I had a relatvely long time too - about 18 months - due to loss/replacement of the left TE and skin healing issues, but did not have radiation. I know it is hard to be patient but I think in the long run it is the right thing to do with radiated skin.
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Just a few minutes before I have to get my youngest in the tub.
Spent 4 hours in the ER today (that's our "urgent care") because I thought I had a UTI. I've only had one in my life, and googled the symptoms, and went in because I had just about all of them.
The ER doc pulled up my scan at the end. NO METS!
Right now it appears my back pain is a combination of a couple things. First, referred pain from a severe kidney infection (but I'm wondering, why now? Why a kidney infection NOW?). On top of that, "significant" disc degeneration, and some musculature issues as well. The ER Doc told me she couldn't believe I was walking around! And said the lack of estrogen is exacerbating the bone issue, making it feel worse than it is......
So I have a couple diff meds, and have to go back in a few days for some more tests because my labwork for urine was wonky. (Full of blood, but no red blood cells. Huh? Greek.)
Thank you all for your good thoughts. I can't tell you how much it meant to me.
I'm truly humbled
Good night!
Tonya
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Thank God, TonLee!!!
The kidney infection doesn't sound good but NO METS! Hooray! I'm so happy to read those words! You have truly made my afternoon/day!
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tonlee - so relieved but sorry to hear about your kidney issue. Hopefully they have you on an antibiotic, you may just have had stray bacteria that worked up into the kidney - sometimes a "silent" UTI can become a kidney infection. I have disk degeneration as well - it is the only thing that showed up on my PET scan from the first week of Dec. - kind of an age thing - mine started when I was the age you are now.
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Welcome Bryona!
I do hope that all of you who celebrate have a very Merry Christmas ! For those of you are not feeling well and or not feeling all that merry , what a difference a year makes! I can barely remember last Christmas. I was looking like a bald cross between Jabba the hut and Buddha and was 3 days post chemo .....drugged, dazed and bewildered.
This year , except for joint stiffness and the ever present yet diminishing worry woes...I am able to enjoy the holidays.
This too shall pass .0 -
TonLee!
WOW! Wonderful...just wonderful to hear your good news. As you can see, you are much loved and respected here! YIPPEE!0 -
ashla, as one who isn't feeling all that merry, thanks for the encouraging words!
I just marked what I figure will be my six chemo dates on iCalendar. I hadn't mapped it all out until now. It's sobering yet maybe it's better to put dates to all of it. I really need to stop being such an ostrich.
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TonLee - Thank God. That's all I can say.
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I just wanted to add the following (after reading your post three times, TonLee!) -
This: "The ER Doc told me she couldn't believe I was walking around!"
Shows how tough you are!!!
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Awesome news TonLee
!!!! I'd take a kidney infection any day over mets! I hope your infection clears up quickly, that should help alleviate some of the back pain. Of course, the disc thing is another story but hallelujah it's not cancer. Very happy for you!0 -
Rhonda2, I just finished 12 taxol/Herceptin treatments using cold caps. I had 2 helpers but I know it is doable for 1 person, with a lot of practice. I am lucky to have a local Penguin rep where I live and she trained my helpers. They were old pros after the first day. I think if you pose the question on the cold cap discussion board you will hear from some who had only one helper.
TonLee, I'm so happy your scan was clear!0 -
LeeA,
We're all different but I got through chemo relatively unscathed. I took all the pre meds and paid close attention to my symptoms..constipation was my worst...., ate a really , really nutrient rich diet, hydrated properly and I did fine.
It's an enormous endurance challenge both physically and psychologically. I think I made 90 medical trips! YOu're already way ahead of me at this point in your prep and knowledge.
I had neoadjuvant chemo and They started me on chemo immediately. I didn't have time to think aout anything. That was very, very, very good for me. You will get through this just as we all did.Dx 10/13/2011, IDC, 3cm, Stage II, 0/2 nodes, ER+/PR+, HER2+Targeted Therapy 11/07/2011 HerceptinChemotherapy 11/07/2011 carboplatin, TaxolSurgery 03/22/2012 Lumpectomy (Left)Radiation Therapy 04/23/2012 ExternalHormonal Therapy 07/25/2012 Arimidex0
